A couple of months ago, C asked me if I would consider writing an entry on her blog about my life with CF. Knowing me as well as she does, she never mentioned it again.
I used to read her posts when she first started writing about her life. I liked binge-reading them. That way, I could run the whole gamut of emotions in one sitting. But then I stopped reading them, due in no small part to me accidentally deleting my link to her site. But really, I stopped reading because those posts are hers; they are her outlook of life, and although I live my life with her, I believe there should be a few aspects of our individual lives that remain solely hers and mine.
In mid-July, C and I went to see a documentary entitled The Ataxian. The film made me question how much I’ve done to promote CF. From walking out of the theater after watching the movie, to a tear-filled conversation late one night with C to right now with this post, I’ve contemplated just what my role is in promoting CF-awareness. Throughout my life I’ve remained quiet about it, telling only those that I felt extremely comfortable with about my health. But lately I’ve been wondering if I should, or more importantly, need, to take a huge step in promoting the disease and the progress that has been made to defeat it.
There are two major aspects of my life that I could provide to help in the cause: 1) my health. Since the age of two, I’ve only had three hospitalizations- one to get me ready for high school; one to get me ready for college; and one in the summer of 2014, although that one wasn’t really due to CF (CF didn’t help, but it wasn’t the main cause). Aside from those three instances, as well as not feeling well in January of either 2010 or 2011, I’ve felt VERY healthy. 2) my family. Starting with my parents (who I don’t think I’ll ever be able to thank enough for all that they’ve done (and continue to do)) and continuing over that last 13 years with C, they have been my lifelong support system. My parents and C have never let me use CF as an excuse for not accomplishing something that I really wanted to accomplish. They’ve never said “no” to doing something that I really wanted to do. They’ve never let me turn into a jackass (hopefully :p). Because they have constantly challenged me and never allowed me to slip up, or give up, I have been very successful in life.
As for W and S... all the treatments I do, all of the hour-plus walks we take, all of the swim lessons or gymnastics classes we’ve taken together, I’ve done them all for you guys. You are now my motivation...
Anyways, I still don’t know how much of a role I’m going to take in promoting CF. Maybe this entry will spur something in me to become more outspoken about my life with CF. (If it doesn’t, here is the link to the Cystic Fibrosis Foundation- cff.org- in case you want more information or care to donate. They really do do good work!) Maybe I’ll write more entries on the topic... If C wants me to :p But whatever happens, I’ll keep on living.